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  • Writer's pictureTerri Tomoff

Milestone Day - 27 years from Ryan's Original DX of Leukemia!

Updated: Oct 18, 2023

Today is the day we take great pause. We usually celebrate every day, but today is a bit more special when it comes to milestones. Twenty-seven years ago, my/our son, Ryan, was diagnosed with leukemia. Our daughter, Olivia, became the cancer sibling - a difficult place to be. The day was similar to today, the crisp temperature in the morning accompanied by brilliant sunshine. That diagnosis, which came around 1:00 p.m., and the subsequent diagnoses set us on a trajectory to an island where very few people live. It’s taken me every single day since then to be comfortable in my skin on that island, not only taking care of a young family but a sick child for years and a spunky daughter.

In a post about a week ago, I mentioned going to Mrs. Pav’s 100th Birthday celebration in Cleveland, Ohio. When our son Ryan was diagnosed, a letter arrived from Mrs. Pav about a week later. In it, she acknowledged my “new normal” and the accompanied poem/essay, “Welcome to Holland” by Emily Perl Kingsley, that fell out of the envelope. It seems like a good day as any to revisit that poem and share it here:

Welcome To Holland

*By Emily Perl Kingsley *

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Hubby Bill and I are typically trying to find the Holland in just about everything. Because, let's face it, I/we never want to miss the tulips or the Rembrandts!

Photo: Taken the first week of diagnosis at Georgetown's 5th floor "train station."



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